Choroideremia Research Foundation

Finding Your Way in the Digital World: A Conversation with Eye Spy Foundation

In this presentation, Eye Spy Foundation Founder Nick Mendler shares the story behind EyeSpy.org and how the platform brings together accessible resources, programs, services, events, and more in one easy-to-navigate location. He also discusses why the platform was built with the blind and low vision community, ensuring it reflects real needs and lived experiences.

Whether you're living with vision loss, supporting a loved one, or are a healthcare or community professional looking for trusted resources, this webinar offers valuable insights into a growing hub of accessibility and connection.

https://youtu.be/3YD5o273J2Y?si=ukTshTEUSPqoZu37

Finding Your Way in the Digital World: A Conversation with Eye Spy Foundation In this presentation, Eye Spy Foundation Founder Nick Mendler share...

We're excited to unveil our newly enhanced website (www.curechm.org), designed to better connect, educate, and empower individuals and families affected by choroideremia (CHM), as well as researchers, clinicians, and supporters around the world.

Our redesigned website makes it easier to:
• Learn about CHM and the latest research
• Access patient and family resources
• Connect with the global CHM community
• Find ways to get involved and support our mission

This redesign reflects our ongoing commitment to improving accessibility, sharing trusted information, and strengthening connections across the CHM community.

Read the full press release to learn more:
https://www.einpresswire.com/article/929973851/crf-unveils-enhanced-website-to-better-connect-educate-and-empower-the-global-chm-community

CRF Unveils Enhanced Website to Better Connect, Educate, and Empower the Global CHM Community CRF launches an enhanced digital resource to connect, educate, and empower individuals and families affected by choroideremia worldwide.

CHMer Christopher M. Dean has shared his personal story of living with choroideremia (CHM) in his book, A Tunnel of Vision: My Struggle with Vision Loss.

In his book, Christopher reflects on his lifelong experience with vision loss caused by CHM. Through his story, he hopes to provide greater understanding of the challenges faced by people living with visual impairments and remind others that they are not alone.

We appreciate Christopher for sharing his experience and helping raise awareness about the realities of living with CHM.

📖 Amazon: https://a.co/d/0gP2p49H
🎧 Audible: https://www.audible.com/pd/A-Tunnel-of-Vision-Audiobook/B0CDNZY7X5

Join us for our next CRF Webinar: Finding Your Way in the Digital World with the Eye Spy Foundation

Thursday, July 30, 2026
11:30 AM–12:30 PM ET

The digital world offers countless resources, but finding accessible tools and information can be challenging. Join Nick Mendler, Founder of Eye Spy Foundation, to learn how EyeSpy.org is helping create a more inclusive digital experience by bringing valuable resources together in one accessible platform.

During this webinar, you'll:
• Explore the future of accessible technology
• Discover innovative digital tools
• Learn ways to make everyday life easier
• Stay connected through technology

Whether you're living with vision loss, supporting a loved one, or simply interested in accessibility, this is a conversation you won't want to miss.

Register today: https://secure.qgiv.com/for/crfwebinars/event/register

A huge thank you to Kayla Schiller, CRF Board Member, for representing the Choroideremia Research Foundation (CRF) at Mission Market at Broadmoor Park and helping raise awareness about choroideremia in the Kansas City community!

Kayla shared the booth with Achilles Kansas City, an incredible organization that empowers people with disabilities through athletic programs and social connection.

Throughout the evening, Kayla connected with local community members, including members of the Kansas City Chapter of the Foundation Fighting Blindness, and shared information about choroideremia and the work of the CRF.

Mission Market was filled with live music, sunset yoga, food trucks, local vendors, handcrafted goods, and so many wonderful small businesses, making it a great opportunity to connect with the community.

Become a Sponsor or Exhibitor at the 2027 CRF International Conference

Help shape one of the largest gatherings dedicated to the choroideremia (CHM) community by becoming a sponsor or exhibitor at the 2027 Choroideremia Research Foundation (CRF) International Conference, taking place June 23–26, 2027, at the Drury Plaza Hotel Orlando – Disney Springs Area in Orlando, Florida.

As a sponsor or exhibitor, you'll have the opportunity to:
* Connect with patients, families, healthcare professionals, researchers, and advocates.
* Showcase your organization, products, or services to a highly engaged audience.
* Build meaningful relationships within the global rare disease community.
* Support educational programming, networking opportunities, and family-focused activities that make this conference possible.

Review Sponsorship Opportunities: https://drive.google.com/file/d/17ZP87Tku-3Id9CIxRwzoocavI08EdMU9/view?usp=sharing

If you have questions, please contact Kathi Wagner, Executive Director, at [email protected].

Stay connected with the Choroideremia Research Foundation (CRF)! 📱

Sign up for CRF text messages to receive updates on research news, webinars, events, advocacy opportunities, and more — delivered right to your phone.

Text CHM to 50155 today to join our SMS community and stay informed.

Today, we recognize and thank Dr. Rachel Huckfeldt for her many years of dedicated service to the Choroideremia Research Foundation.

As a long-time member of CRF's Science Advisory Board and our most recent Academic Chair, Dr. Huckfeldt has provided invaluable leadership, scientific expertise, and guidance that have helped shape CRF's research program. Following her resignation from the Science Advisory Board, we extend our sincere gratitude for the time, knowledge, and commitment she has shared with our organization and the CHM community.

We are also pleased to welcome Dr. Malia Edwards as the new Academic Chair of CRF's Science Advisory Board. Having previously served as Academic Vice Chair, Dr. Edwards brings valuable experience and insight to the role, and we look forward to working with her as she leads the academic review of research proposals during the 2026–2027 grant evaluation cycle.

Please join us in thanking Dr. Huckfeldt for her exceptional service and welcoming Dr. Edwards to her new role.